I Am Here, and That Is Enough
As I prepare to write my first column in over a month, a nasojejunal tube is pumping food into my small intestine, reminding me I’m not out of the woods yet with my health. My energy…
Life, One Cup at a Time
— Alyssa Silva
Alyssa Silva is a writer based out of Providence, Rhode Island. She was diagnosed with SMA type 1 in 1991 when she was just 5 months old. Aside from writing, Alyssa is the chief creative officer for an intimates brand and runs a small business selling her artwork. In her free time, you can find her canceling plans to hang out with her golden retrievers, watching reruns of “The Office,” and convincing others why Taylor Swift is the greatest of all time.
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Why is listening to my body when I’m ill so hard to do?
“No, I’m totally fine” are often my famous last words when I’m actually not fine at all. Sometimes when an illness arises, I’ll downplay my symptoms. I’ll chalk them up to having a bad day while disregarding my…
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Facing New Challenges Gives Me Clarity and Control Over My Life
For nearly two years, my days have been filled with health problems. Well, I’ve always had health battles to deal with, but in recent years, they seem to have amplified, or in some instances, multiplied. Nevertheless,…
Staying Organized Helps Me Simplify Life With SMA
Before I dive into this column about how the art of organization keeps my life balanced, I believe a disclaimer is necessary. After all, no matter the number of “Queer Eye” episodes I watch and self-help…
Reflecting on a Year Gone By Brings Me Gratitude
Like many others at the turn of the year, I enjoy setting aside some time to reflect on the past 365 days. I’ve never been the goal-setting type at the start of each year, so reflection…
Cherishing Togetherness During the Holidays
Every year at Christmastime, my family carries out one of my favorite traditions. We all gather in the living room — my parents, brother, his wife and kids, and me — and watch the classic Claymation movie “…
Being Rare Is All I’ve Ever Known
If you were to sort through my medical records, you would notice that some of the files list my diagnosis as “SMA I/II.” I had a good chuckle the first time I noticed this. After all, there is no…
Living With SMA Taught Me to Think Efficiently
Something you may not know about me is that I have a tendency to make a lot of impulsive decisions. Of course, when it comes to more complicated and serious matters that require tougher decisions to be made, I…
Managing My Health Can Be Exhausting, and That’s OK
As I was leaving a doctor appointment a few months ago, I reached my breaking point. In fairness, it was long overdue. For weeks, I could feel the tension bubbling inside me. Anxiety would greet me…
Glam for the Scan: How One Outfit Changed Everything
While I can’t speak on behalf of every medical professional I’ve come across in my lifetime (truth be told, that’d be quite a large number), I wouldn’t be surprised if they thought I didn’t own many clothes. I wouldn’t…
Why I Welcome Children’s Curiosity About My Disability
A few years ago, I wrote about the need for more understanding and awareness about disability. No matter how many years have passed or how much has changed, I’ve always felt strongly that this topic should be included…
The Challenges of Making Friends as an Adult With SMA
Making friends as an adult is hard. At least, it always has been for me. After all, I’m an introvert. I like keeping to myself. But friendships are important to my emotional well-being, and I cherish…
Multigenerational Living: Why My Unorthodox Living Situation Works
Ed. note: This column was written in collaboration with fellow columnist Halsey Blocher for SMA Awareness Month. Read about her experiences with multigenerational living and how the two stories intersect at ”From Where I Sit.” It…
